Swallowing and the Last Gulp of Air
by Marlene Schoenberg
It was Thursday evening,
March 30th. The NBC News commentator just announced that Terri
died. I changed the channel to CBS, and heard the Pope had just
received a feeding tube. It seemed that “feeding
tube” was the new media buzz word. Since then, the Pope’s
death filled the headlines and Terri Schiavo’s saga faded
into yesterday’s news oblivion.
Her case became a heart wrenching public drama that is privately,
but just as painfully, carried out in thousands of hospitals, nursing
care centers and hospices around the country every day.
I am a qualified speech
language pathologist with experience in feeding therapy. I’ve
sat with families as they made these excruciating decisions for
a family member. I also made some painful decisions about my
own father.
My father, Louie Cohen, lived in New York most of his life and
came to live with my husband and me three years before he died.
During that time, his multi-infarct dementia gradually robbed him
of his mental abilities. On our care team, I was the case manager
and my husband was the devoted nursing assistant. Dad brought us
great joy despite his disabilities and declining ability to initiate
conversation.
During the last week
of his life, he ate well at our Thanksgiving dinner. By Sunday,
he couldn’t swallow. Co-ordination of
all his physical movements fell apart, too.
We took him to the
hospital that Monday. I remember chatting with him as he sat
in his wheelchair in the waiting room; he was still smiling and
interacting. By Tuesday, he was in a low vegetative state, but
not a coma. He didn’t seem to know we were there.
He wasn’t eating.
However, if I did therapeutic mouth texture massages, he would
open his eyes, look at me and swallow a tiny bit of pudding.
One time, when he opened his eyes, they rolled back like a broken
China doll. That static look was the brain trying to register
stimuli but failing to make connections.
The doctors told us
that the situation was grave and Dad wasn’t
going to recover. We didn’t want to believe it. We knew the
situation was severe but we just didn’t want to give up hope.
Sadly, to our shock and surprise, he died the next day. However,
there was one saving grace. We had discussed his living will with
him months before, when he was still of sound mind. He said he
wanted no heroic measures. We also asked him if he wanted to be
buried in Minnesota so we could visit his grave. He said he would
like to stay near us, even in death, even though the rest of the
family was buried in New York.
Needless to say, this
created a family furor. One of my aunts didn’t speak to me for five years because we buried him here.
We knew all my father’s wishes, but my aunt had another agenda.
She tried to make me feel guilty and sometimes it almost worked.
Like my aunt, Terri
Schiavo’s parents had their agenda and
they did not want to let go. Once they got the lawyers and the
courts involved, it became a media circus beyond the scope of the
of the initial issues. Once Congress and the president became involved,
the real issues were blinded by political agendas.
Terri Schiavo’s husband knew her wishes, just as we knew
my Dad’s wishes. The real focus of this debate should be
about the rights of the patient to decide his/her own fate. The
Schiavo case is essentially an ugly family dispute that might have
been solved with sensitive counseling and mediation early on. The
sad part is that political groups used her plight to further their
agendas.
If anything good comes
out of this public discussion, it’s
that even young people should discuss their living wills. If our
wishes are known and written down, there is no dispute about what
to do.
In a conversation I had with a physician, we both agreed that
the entire locus of resolving a dilemma like this lies amongst
the family, the patient, and the physician.
I once worked with
a very wise physician in a nursing care facility. She made a
decision that I will never forget. The patient was an 81-year-old
woman who had had quite a few strokes and had been on the verge
of dying several times already. Each time the family gathered
and prepared for the worst. Each time she was brought back to
life by heroic measures. Each time her neurological functioning
spiraled down. She couldn’t speak; she couldn’t eat;
she couldn’t move. Then, the question arose about inserting
a feeding tube to prolong her life.
This courageous and
creative doctor had a wise but unorthodox plan to resolve the
family’s angst. She personally spoke
to everyone on the patient’s care team and asked for their
opinions. She spoke to me, the nurses, the nutritionist, the nursing
assistants, and the family members. In a nutshell, she got a 360
degree perspective on what was going on to help her make the best
decision for the patient.
She decided to have intensive swallowing therapy for this patient
twice a day for two weeks and not insert the feeding tube. After
two weeks of intensive swallowing therapy, they would see how she
was doing. A low tech personalized miracle was crafted by that
physician-led team.
Within two weeks,
the patient was eating pureed food and drinking thickened liquids.
With a little assistance, she was eating on her own. and she
didn’t need a feeding tube. The team worked
with compassionate care. This patient lived with dignity for a
year.
Without modern high
tech medicine, Terri Schiavo would have died soon after her brain
injury. Modern technology kept her alive. Every life is valuable
whether you are a housewife, janitor or Pope. When the body can
no longer function and all cognition is gone, it’s time
to let go.
If the truth of the
patient’s wishes are not known, last
rights are denied despite last rites being given. When the patient’s
last breaths of life are shared with a loving family and a compassionate
care team, everyone can let go together and find some peace. If
the patient, family and the medical staff are in conflict, peace
will be hard to find.
Life is so precious,
but when it’s time to let go then we
all have to let God take over.
